Elisabeth Heflin is exhausted.
She’s been by her 15-year-old daughter Kaitlyn’s side while she suffers debilitating seizures. She administers Kaitlyn’s daily doses of medication and makes sure her feeding tubes are working properly. Kaitlyn receives nutrient-rich fluids intravenously at all hours of the day and night. Heflin, a single mom, is her daughter’s round the clock caregiver.
“I just want to be her mom,” Heflin said. “Just for breaks, just to be a mom. That would be awesome. I need some help.”
The state of California says Kaitlyn’s fragile medical condition qualifies her for 16 hours of “at-home” nursing care every day. But for more than three years, Kaitlyn has received exactly zero hours of care in her Sonoma County home. The Heflin family can’t find an agency in the Bay Area that can help.
The state has an obligation to ensure that kids enrolled in Medi-Cal – kids like Kaitlin – get the services they need. But that’s not always happening. As the NBC Bay Area Investigative Unit first reported in 2016, a Napa family had to relocate to San Diego to find nurses who could help their 2-year-old daughter.
Despite new indications that the lack of home health care is impacting even more families, the state still isn’t convinced there’s a problem. The Department of Health Care Services, which oversees Medi-Cal, says there is not a systemic or geographic access-to-care issue. The department cites reports that show the number of home health providers has remained steady.
But as NBC Bay Area exposed last year, the department didn’t even keep track of the hours nursing agencies failed to fill, either because companies couldn’t staff the hours or because they refused care to patients. The state says it is now collecting this data, and hopes to complete its analysis by the fall.
DHCS says qualified home health nurses are limited by the same factors that affect any labor market, including retirement rates and the cost of living in different cities.
“These factors interact with the availability of nurses and authorized hours, the geographic availability of providers, and the competing market demand for such providers,” a department spokesman wrote in an email.
But critics say the state is failing families across California. William Leiner, managing attorney with Disability Rights California – a statewide advocacy organization – says federal law requires DCHS to make sure children get the help they are entitled to through Medi-Cal.
“When nursing hours are authorized, the state has a corresponding obligation to make sure those hours get filled,” Leiner said. “When they don’t, it’s a problem.”
Following NBC Bay Area’s investigation, Disability Rights California launched its own investigation into the availability of home health nurses. The group asked to speak with struggling families, and heard from more than 100 of them.
“From the stories we’ve heard, it does seem to confirm that children are not getting the medical services that they have been determined to need,” Leiner said. “Hearing from over 100 families speaks to us that it’s something very significant in the system that’s worth a much closer look and deeper dive.”
Elisabeth Heflin has spent countless hours on her own, calling nursing agencies. Last year, the state gave her a list of more than 40 providers. The only agency that said it could help her daughter Kaitlyn, is located in Los Angeles.
In a May 2016 email, a DHCS case manager told Heflin that she had also contacted the agencies on the list, but none of them had availability. The woman said she would continue to follow up in hopes of finding a viable solution.
Heflin says she has yet to hear back, and subsequent phone calls and emails to DHCS have gone unreturned. When asked why she thinks her inquires to the state have been ignored, Heflin offered a theory.
“I think the issue has been overlooked for so long, no one has an answer,” she said. “I’m not asking for anything luxurious. I’m not asking for money. I’m not suing anybody. I’m asking for care for Kaitlyn, that is covered – that she is supposed to have.”
Disability Rights California is interested in talking to families who are authorized for in-home nursing or private duty nursing, but who cannot find nurses. Representatives are encouraging families to contact them at 888-852-9241.